Family issues!

[cinmac]

Hi to all,

I became sick about 10 yrs ago.  However most of my bloodwork is negative and the rheaumie was kind of ambiguous at that time, so my husband had a really hard time accepting my illness.  On one hand he said he knew I was sick because he saw me ice packing my eyes, shaking with chills etc., but he would say things like "mind over matter" and that if I tried to do more I might feel better.  At this time my eyes were a 0 and my mouth was cracked leather and all I wanted to do was scream.

A few years ago I went to my son's house to help with their new baby.  While I was there, it turns out my son asked my husband if I was really sick.  My husband said yes, but even when he was telling me about the converstaion, his body language, tone of voice etc were saying he really didn't think so. Since then, my son treats me like I am a total hypochondriac.

About 7 months ago we moved to the town where our daughter lives-at her insistance.  I was in a flare at the time, and my poor husband had to do it all.  My daughter said she would help but we barely saw her.  Since then, the pattern has continued.  She never asks how I feel, or what the results of any tests are.  If it comes up in conversation that I am sick and someone asks me about it, I try to explain SS.  She acts embarressed that I would mention it to anyone.  I don't drag it out in every conversation...in fact most people, even some good friends know very little about my illness but I'm not going to hide either.

It is getting to the point that I am angry with her but of course it is silly to demand that she should care about my illness, when obviously she really wants to ignore it.  Any suggestions on how to handle this?  We have met some of the parents of her friends and they have asked us out to dinner and other stuff but I am afraid that if we socialize with the same families it may aggravate her feelings of embarrassment.  I'm pretty sure it is my illness she wants to hide-we don't drool; or burp incessently...and we haven't dragged out one embarrassing baby picture.

My husband has come around and become a real support to me, but I wonder if his disbelief in the beginning fueled some of this and if he should be more vocal now about what we are going through.

Any suggestions?  Should I just ignore the attitude?  Both children are in their 30's and to me should be mature enough to deal with this.

Thanks for any help.

cinmac

[Reanne]

Cinmac,

I can relate with your situation.  My grown children are younger than yours.  They don't understand what we go through.  I don't say anything to their friends about my illness.  Not too long ago my middle daughter said, "I didn't realize how serious your illness could be until my co-worker told me about it."  She didn't know because like your children, she chose not to listen when I first tried to explain it.  I've actually told my husband that I feel like he doesn't understand that I have a disease that makes me feel bad

I guess my only suggestion is to hang in there, continue to do what you can, rest when you need to, and take care of you!  I'm sorry your family doesn't understand. 

Reanne

[kimbo]

cinmac,

My advice for informing or educating family and loved ones, is to find a good article, and make copies. Keep some copies handy and just hand them a copy and say it is easier for them to read about than for you to explain it. I think that way, the written word can refresh their memory if they have a copy and also you are not the one verbally giving them the information, it places you out of the position of sounding on your own health issues.

Relatives sometimes feel angry for you to have a chronic illness and when they don't understand it, they fear the unknown. Our children simply do not want us to be ill, so it is also a form of denial.

cinmac, this issue in it self is also part of our journey. I am sorry for you to have to deal with this and also the AI issues. But it seems to be a familiar happening with family members.

I am glad your husband has come around. I hope you communicate with him how all this makes you feel, and it is added pressure to your already stressed condition with AI health issues.

You can also make copies of information on our forum here.

blessings kimbo

[jonnell]

Cinmac,  Hi Im only 38 but my advice would be to sit her down and talk to her,  ask her how she feels and if your illness makes her uncomfortable.  Sometimes us children are so wrapped up in our own lives we dont think how we are affecting our parents.  I dont have a relationship with my parents,  they dont agree with my choices,  but everyday I wish I could talk to my mom.   You sound like a great mom who doesnt want to burden your daughter or family with your problems,  but maybe if she understands what your feeling she will be more supportive.  I have a very supportive fiance who without I wouldnt be able to get thru the day.    Hugs and Kisses   Jonnell and Jenna

[lesleyjoy]

Hi Cinmac, it can be really difficult for some people to accept that you're unwell especially when your bloodwork is negative and I sympathise with you. Like you say, it's to do with the maturity and I believe also, the nature of the person. My eldest daughter doesn't accept that I'm unwell at times and doesn't want to hear about it. It's the same when her fiance has a flare up of his eczema and gets stressed, she just doesn't have the empathy and can't understand why he doesn't snap out of it. She says it's all his mindset, yeah right I think it's a denial thing with her and she expects everything to always be fine, which is unrealistic.
My younger daughter is far more mature and empathetic and easy going by nature and always has been 

I'm also glad that you husband is now more understanding, it's good to have someone on your side 

Good luck with it all, Lesley (NZ)

[Scottietottie]

Hi Cinmac 

I have 4 adult children and they deal with it by ignoring it. That is just what they do. They all live at a distance now and going to see them is quite a physical ordeal but they don't choose to make allowances.  I always tell them not to take time off work when I visit because that way I can sleep during the day when they're at work!!

Take care - Scottie 

[Dolly Dimples]

  Cinmac, I think this is an issue we have all had to deal with,  My daughter fortunately understands how I feel, as she herself suffers multiple allergies..

                 and she always says that I am the only one who understands how she feels, but  my son doesn't even know I suffer with anything!

                       My OH knows I have SS, but doesen't count it as anything too bad, and is rather like yours was,  "ah well , we are getting on now"

                  as tho' it is something that happens to everyone... Mind, he has Emphysemia, so I just go along with him , but I come here where I feel at "home"
                   It would be nice if someone came in now and again and asked "how are things "?

                            One thing about SS , is that  it seems to make us more resiliant!!
                                                                                                                           I feel for you, Dolly .
                   

[Butterfly]

Hi Cinmac. So sorry to hear that your family isn't understanding of all that you are going thru. I think it is something that we all experience-especially because our illness doesn't make us "look" ill. It can be very frustrating! My husband tries to be supportive and for the most part he is. However, sometimes he thinks I'm just being lazy when I don't have the energy to do anything. My sister and I used to be very close. We talked often. But since this last flare (which has been going on for 7 months) she avoids me. When I call she has some excuse for getting off the phone. She rarely calls me anymore. It hurts but there is nothing I can do about it. I have SS and I'm not going to pretend that I don't to make her feel better. This flare has made me extremely fatigued and has increased the memory issues. She just doesn't understand why I can't work anymore. I get the feeling she thinks I'm lazy too. Thankfully I have some family and friends that are very supportive. My mother attends the SS support group meetings with me. She also goes to most of my dr appts since I've become a lousy medical historian. My kids are pretty supportive too (as much as 11, 16 and 20 year olds can be). I have some great friends that I'm close to as well. I've decided I can't change how someone feels towards me or my illness. I don't have the energy to worry with that anymore. Maybe someday they will come around. I think you should tell them how they are making you feel and then don't worry about it anymore. Take care!

[cinmac]

I will tell u I am so glad I found this website.  When I read about you all, I think that's me too.  They know what it's like.  Finally someone who gets it.  Plus most of u have symptoms like mine that my doctors do not believe r connected to SS, so I feel much less like a lunatic now.

I have a good friend who has fibro.  We met at a pain support group and we have talked about how on one hand we understand the problems of chronic illness but it is still difficult to understand the exact nature of someone elses suffering because we all view life from our own particular perspective.  You know, what bother's her may not bother me, etc-but at least if one of us cancels a planned outting the other one doesn't get mad, which is more than I can say for some of my family members. I think that at some level it scares my children to think that my husband and I are both aging, getting some health problems etc.  We were always very active before my illness and I think they thought we were indestructible.

My husband has become such a support sytem now that I don't know what I'd do without him.  I hope that at sometime he will go back to the kids and tell them he was wrong-that SS is really a serious health problem, but whether or not that would change anything I don't know.

Any how thanks for the kind words of support.

cinmac

[lesleyjoy]

I'm glad you mentioned about belonging to a support group as they're so valuable. I also belong to one (Lupus/Autoimmune) and I made a friend there who just lives a couple of streets away from me. Although she's 14 years younger than me (I'm 52) we get along really well and support each other when we're feeling unwell  Her husband isn't very understanding or supportive (the same situation that I was in 13 years ago) so I understand how she feels. We're both part time teachers as well 

Cheers, Lesley.

[Pisces24]

For some folks, if you are not "touched" with this type of illness early on as a child or have something like it personally, most people don't "get it".      My father was disabled when I was a teenager "only child". So I have an early on view/understanding of what illness/ disease does to people, plus the emotional toll.

You do what you can to educate those in your circle but sadly there will always be some that don't want to really understand or be educated. You have to feel to some extent sorry for them because at some time life / reality is going to give up a BIG abrupt wake up call.  

Oddly, I've never really connected with people around my age in the past. But now that they are getting older and "woke up finally", I actually feel we are getting on the same wave length.

[Cheryl]

Cinmac,
   A lot of us know what you are going through.   I've been on both sides of the issue, since my mom had Sjogrens, too.   I felt sorry for her, but didn't really believe how bad it was for her.   I saw her as lazy.   Even when I started having symptoms myself, I didn't understand, because mine were mild.   As her health declined through the years, it became apparent that her illness was real and serious.   I became a believer.

   Now that I have more involvement going on with the disease, I wish that my family could understand it better.   I know that they don't understand, though, just as I didn't.   And if passing this on to my kids is the only way they'll ever understand, I hope they remain oblivious.

   I'm sorry that your family have so little respect for what you are suffering.   Please believe that they all love you and wish you were well!

Hugs,
Cheryl

[lynnmarie219]

I agree with what many of you have already said here.....I think that family members or friends who just don't "get it" even after trying to explain things or giving them some other kind of information to read and absorb are really afraid of the unknown. Granted there are some people out there who want to be the main focus of everything even when it comes to being sick and they will always try to "one up" you.

But most people are afraid of what they don't know...they are afraid of admitting someone that they love is ill.....and they are afraid of what the future may hold. It doesn't, however, make it any easier when they can not express these feelings to us and they come across as rude or uncaring. I guess all we can do is to try to educate and inform and then learn to let it go if they don't want to hear it.

This is a very hard situation  to deal with and I'm sorry for all of us that have to....when you don't feel that the ones you love care enough back...it can be hurtful. 

[SassieCat]

Cinmac,
My heart goes out to you and I understand how badly this hurts.  I have three sons who don't know what I have, don't want to hear about it and the oldest one even remarks that it is in my head.  When I told him about my heart condition, he said, "well, we all gotta die sometime".  I was crushed.  He constantly makes comments that maybe if I ran a mile or two every day the it would all just go away.  Of course his wife's family has everything I have and they just workout and it's so much better.  BAH!!!

I even once heard my little granddaughter tell me to lose some weight and I won't be sick.  She was about 5 and I wonder where she got that idea. 

I don't think they can accept Mom as being ill or have to face the concept that someday they won't have here around.  It is so much easier to shut off feelings if we don't talk about it.  I gave up and I don't tell them anything anymore.  I don't have the umph to fight an uphill battle with them. 

I do know what you must be feeling and know that there are people who do understand and who care!!!

[Babs659]

This is a very tough issue and leads us to the depression that is so common with Sjs.  My husband totally believes me, because he KNOWS me, and how active I used to be.  He has seen me struggle to keep up, and not just give in to it.  He has actually been telling me the same thing the rheumy has---you need to rest.  As for everyone else---friends, co-workers---phooey!  They just don't get it.  I know some of them think I am exaggerating.  I hear comments like, "well, you LOOK good" and, "are you sure you're not just burned out" and, "you'll feel more like running now that spring is coming."  I have pretty much just given up and shut up about my illness---unless someone asks and seems sincere.  Stinks!